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What Else Could Cause A Positive Biopsy?


JessieFree

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JessieFree Apprentice

I had a positive biopsy and but all my blood tests were normal. My GI said to try the diet FOR 3 MONTHS and if I didn't get better than it was IBS (he says its one of the two but can't be sure which one). He didn't even ask me to come in for a follow up. I went to my family doctor for a second opinion who gave me a food allergy test. It was normal so should told me to go off the diet. As soon as I went off the diet I started getting leg cramps at night again, but other than that didn't feel any worse. I went back on it after a few weeks of lots of gluten. I've been gluten-free for about a month now. I have had no leg cramps but still have the gas/bloating. I don't get diarrhea just constipaton. Does this sound like celiac or are the cramps just a coincidence. I had the leg cramps when I was young but never had any GI symptoms. They stopped for years and just recently came back shortly after my GI problems started. My doctor never told me what could have caused the biopsy to be positive if it wasn't celiac.


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Ursa Major Collaborator

Usually, a positive biopsy means that you have celiac disease. The blood tests aren't that sensitive, and you probably had a false negative.

Your regular MD is an idiot, if he/she thinks that celiac disease will show up in allergy testing, since it is NOT caused by an allergy, but by an autoimmune reaction to gluten. Some people with celiac disease will also have an allergy to wheat, but most don't.

Blunted villi can also be caused by a dairy or soy intolerance. Since being on the gluten-free diet is helpful to you, you do have celiac disease, but may also be intolerant to dairy and/or soy.

Dairy is known to cause gas, bloating and constipation, as can gluten. So, you may either not have managed to cut out all the gluten at this point, or you have other intolerances as well. I would recommend cutting dairy out at this point, to see if it helps.

I also had leg cramps as a kid, and my mother was told that I had growing pains. Too bad that those 'growing pains' (there is no such a thing) didn't go away until I eliminated gluten at the age of 52.

One of my grandsons also had those leg cramps, and they went away when his mother put him on the gluten-free diet a few months ago (he is five).

Guest j_mommy

Constipation is a sypmtom of Celiac!

I agree with ursa major n everything....celiac is not an allergy!!!!Jeeez when will Dr's figure that out!!!!

I would stick with the diet....get your scope pics and records from teh GI you went to and find a different one to look atteh pics!

GFhopeful Rookie

i would say to get a second opinion from another GI too. i am waiting to get a second look at my endoscopy as i had negative bloodwork but positive biopsy too. brfore going gluten-free, i did have GI symptoms after months of not having GI symptoms but other symptoms (dizziness, headaches, bouts of illness). It seemed to escalate to GI symptoms and weight loss before i was finally diagnosed. I am doing better on gluten-free but still having really bad bouts so that's why i am getting a second opinion and hopefully further tests to find out what else is going on. i am not a pushy person and it took some time and pushing from family members to make me follow through with this but i think it will be worth it. is there a celiac expert in your area, like a university or something that you could go to? good luck feeling better.

lovegrov Collaborator

A positive biopsy is pretty convincing. From everything I've read, you shouldn't doubt it.

richard

Nancym Enthusiast

Negative blood work means absolutely nothing. About 30% of celiacs have negative blood work if they don't have total villious atrophy. You're just lucky enough you didn't get to that stage before it was caught.

hez Enthusiast

Based on my bloodwork my family doc thought I had borderline celiac (is that like being a little pregnant?). However, my gi did an endoscopy which showed complete villious atrophy. Fast forward two years, I had another endoscopy, I now have fine delicate villi but my small intestine still looks like my stomach.

It sounds like you have celiac. However, if you need another opinion go get it. Just make sure the doc is well versed in celiac or you may cause more damage down the line with an incorrect dx.

Hez


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  • 1 month later...
Joss Rookie

My doctor told me a positive IgA test was not worth bothering about. I found a gluten free diet helps and is worth bothering about. Find someone who can explain whether it is gluten sensitivity or not. Your health matters both to you and your family.

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      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
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